What Fibromyalgia and Pain Have Taught Me

Being in pain on a daily basis has taught me a lot. Not only has it taught me about my body but it’s also taught me about my soul.

Rosemary Lee

So, what have I learned?

I’ve learned that chronic means forever. When I was first diagnosed I didn’t know what it really meant. I knew there would be bad days but I actually thought I’d also have pain free days. What I’ve learned is that Fibromyalgia doesn’t change. It’s there with you in varying degrees of severity on a daily basis. Wishing it away doesn’t work.

I’ve learned that trying to fix all of this sometimes doesn’t work. I’ve jumped on every bandwagon out there. I’m not saying that a good diet doesn’t help and I’m not putting down alternative medicine. I think there is a place for all of it. I, personally, just don’t think that there is “the miracle cure for only $29.95” out there. I don’t think all of this is a conspiracy of “big pharma.” Having said that, I think the medications that have been approved for Fibromyalgia don’t work for a lot of patients and, personally, I think the risks outweigh the benefits.

I’ve learned that we need to take responsibility for our actions. I can’t reinvent the wheel. I was born with my Type A squared personality. I loved the stress of the job and the more on my plate the better I liked it. Your body was not meant to live in the “flight or fight” survival mode on a continual basis. You will burn out. I’ve come to realize that my excuses for not coming down off of hyper drive were just that: excuses. We need to decompress not only for our mental well-being but also for our physical well-being. Now, for the caveat. Just because we loved the lifestyle does not mean we did this to ourselves and if we just calm down it will go away. There is a switch that has been tripped and, hopefully, that is what researchers will try to figure out. Me? If I do anything I do it all the way. I work hard, play hard and rest hard. I also got sick hard. I guess I’ve been perfect at that as well. I wake up everyday thinking that I’ll set these realistic boundaries for myself and once again I find a way to count everyone of my imperfections. I find a way to include just one more task, one more email or one more activity that I know will hurt me tomorrow.

I’ve learned that I can’t be in denial. It doesn’t work. Trust me, I’ve been down that road too. If I just forget about it and push through it will be ok. Your body has a wonderful way to pay you back. I do it all the time because I don’t listen to my own advice. I feel pretty good? Back to Mach 2 until my body reaches up and slaps me as if to say, “you were acting stupid and I stopped you for your own good.” Gee, I sound like my mother.

I’ve learned to forgive myself. I know that we hear from articles and people all the time that we are the result of trauma and abuse or our own unresolved hurts and issues. Maybe it’s true and maybe it isn’t. I do know that I didn’t hurt like this until I had a car rear-end mine in 2008 going about 35. Maybe I need to forgive him because NONE of this started until that moment. Then again, maybe that was just the trigger. I don’t know. Here’s what I think about forgiveness. I think asking forgiveness for those issues can be healing if you have had trauma or abuse and need to move forward from that. Forgiveness doesn’t give carte blanche for the act but what it does is tell the ones who have hurt us that they no longer hold any power. I think on another level we need to forgive our body for betraying us and changing our lives. I’m a natural cynic who has unyielding faith. Weird, isn’t it? I have an absolute faith in the tenet that God has never left me or forsaken me, no matter what my personal circumstance. Whatever I’m going through right now will take me to a different level; not only in my life but my faith. I’ve never faulted God for my personal circumstance. On the other hand, if I hear “suffering builds character” one more time I may scream.

I haven’t learned that it helps to keep our minds positive. This one is the hardest for me. I am not Mary Sunshine. I tend to see the glass half empty and as far as human nature goes, well; I’ve never been disappointed. I like phrases like, “when you see the light at the end of the tunnel it’s probably the train coming at you full speed.” So how do you do this? I don’t think I’m a pessimist….I’m more of a realist. I have really tried to be optimistic but if any of you have some ideas I’d love to hear them. I want to be better at this, I really do. I only put this in here because I haven’t learned this lesson yet.

I’ve learned that we need to trust our own judgment. There are all sorts of groups on social media out there. If you don’t follow a gluten free diet you’re going to be in pain. If you don’t follow use alternative medicine you won’t get well. If you go to a regular doctor you’re an idiot. I’ve seen people used medical terminology and they have NO CLUE what it truly means. It does take awhile to find a doctor that will understand and listen. I’m not saying they are infallible but to trust social media isn’t the way to go. We need to listen to our bodies, our doctors and ourselves.

I’ve learned that I need to let go. Life has a funny way of showing you another destiny than the one you carved out for yourself. What I did and had before is different now. I can’t hold on to the past as desperately as I want to. It isn’t good and I might miss opportunities that show up because of chronic pain. What does it take to reach a point of acceptance? Sometimes I think acceptance and resignation is the same as defeat. There we go again. Anything less than perfection is failure. In my head I know that I’m an imperfect being but the bar that I’ve set for myself is a different issue altogether.

I’ve learned that it’s not a bad thing to be a little vulnerable. This one is hard for me as well. I’ve always equated vulnerable with weak when, actually, it’s quite the opposite. It takes a great deal of strength to admit weakness. I’ve found out that sometimes I’m not as strong as I think I am. I’ve also learned that everyone else has weakness as well. We always think the other person has it all together. That’s not necessarily true. I think it’s more than that, though. I still say it makes me imperfect and weak. It makes me realize that I’m not as strong as I think I am and I can’t take care of myself all the time. It’s self-reliance and I may not be in total control of my destiny. I hate that.

I’ve learned that I don’t have control. This one is a constant struggle. I’ve always liked to control the environment around me. That’s a huge part of my personality. I’ve always felt that if I can control things then I won’t get any nasty surprises. Well, I didn’t say that it worked I just said I liked to operate that way! I’ve had to accept that I won’t know what I’m dealing with regarding my body on a day-to-day basis. That means I can plan but plans may change. I’ve had to let go and that isn’t easy for me. So many things haven’t been easy and I’ve had a hard time dealing with that. I know it’s something I have to learn to accept but it’s that darn little word called control. I don’t have it and it makes me crazy.

So here’s the top ten lessons for the day.

What I’ve learned.

What I’m still learning.

And what I should give up.

As far as that last one?

I’m not big on giving up things!

Editor’s Note: Rosemary Lee is a writer who lives in Las Vegas and suffers from fibromyalgia. She writes for the National Pain Report. To see more of her work visit her blog (here).

As I read the comments I’m the one who’s been brought to tears. Thank you all for your wonderful words. It means so much to me. If I can help one person navigate through this mess called Fibromyalgia then it is worth all the pain.
Rosemary

Thank you for writing this! It has brought me to tears. This is me, how I feel, everything, right down to the accident, same speed – hit from behind…the only difference is that mine was in 2009. I’m sitting here in the dark, reading this…..it’s almost as if you looked into my soul, and told my story, word for word… of course, more eloquently than I could ever could. I can’t wait to read your blog. You have lifted me up, given me the words, eased my guilt. I am forever in your debt. I know the pain and anxiety will always be there, but this really helped me find my voice. The ME on the outside; the fake ME, will never replace the real ME – the ME who will now speak up, and say, “No, I can’t do that right now.” Or, “I can’t walk around the block a few times to get ready for the long walk to and from the car to our seats at the football game! I will go with you, but afterwards, I’ll probably be in bed for the next 2 days recuperating. And that’s okay!”
Thank you.♡

I am so glad that I literally stumbled upon this blog as I read The National Pain Report, during a ‘feel good’ moment in a week filled with pain, lack of sleep, etc. Like so many others, I have been diagnosed with fibromyalgia. I related wholeheartedly to Rosemary’s blog. Because I am also an aspiring writer (can’t work at my high powered position) these days due to this pain – I knew someone else was walking in my shoes and would demonstrate different methods that would help live a more fruitful life and also deal with this disease.

When I was initially diagnosed with fibromyalgia, I told myself it would disappear and I would return to work. Of course that was/is the mindset of a Type A personality. The pain and sleepless nights have not stopped since 2010 and, although I still dream of returning to work in some capacity, I realize that it must be my passion to feel better and enjoy a beautiful quality of life that has left me looking out of the window – instead of enjoy the beauty of time that can be spent outside.I have been trolling the internet all week because it’s raining, windy and the seasons are changing. I have enrolled in a water aerobics class to strengthen my upper body and have started walking again – just to find one iota of relief!

I know I can’t do it alone and, I miss my writing classes. It hurts too much. I’m sick and tired of feeling tired, restless and, anxious because of this pain. Writing is good medicine for these aching fingers and burning shoulders. I decided this week that I would find someone or something that would enable me to accomplish a few small goals and feel better as I search for methods/doctors/articles, etc., that will help me with the issue of fibromyalgia. I’ve made it home.

Rosemary, thank you and this publication for allowing me to participate in a new way of life that is defined by our pain. We will find a cure.

Thank you for having the courage to be vulnerable here – although I have a mild form of Fibro, after 20-years of medical nightmares and having to come to terms with losing almost everything (including the A-Personality), while waiting 5-years for SSDI, you were on point

What Ive learned: forever is just until I die
most Dr’s dont care
lyrica, duloxetine and every other drug is a joke-execpt morphine/narco and dilaudid etc….
usually takes 2 things to start fibro-stress and a painful injury together
massage therapy is great if you are rich

Thank you, so much, for sharing this. There’s so much in what you say that I can relate to. As a fellow “Type A squared” control freak, going from never working less than two jobs at a time – and always being busy in between – to being flat on my back most of my life due to a very painful and debilitating SCI, I’m just not up to hearing about how smiling improves my face value or any of the other wonderful platitudes thought up by people who…well, who aren’t me. We all deal with our personal struggles in our own ways. While I don’t believe in wallowing in my misery, neither do I feel compelled to put on a happy face for the sake of others. Not to say I don’t at times do exactly that, but it’s a huge emotional drain, and allowing myself to simply feel whatever it is I’m feeling is much less of a struggle. The best advice I ever got, and have taken, was from a dear friend who loved me for, or maybe in spite of, my less than cheerful demeanor. She told me, “use the power of your pain.” She was right; it’s helped. The occasional roar like a bear with its head stuck in a wasps’ nest can be the most freeing experience! I heartily recommend it to all, Type A squareds most definitely included.